Tuesday, December 6, 2016

I'm hopeful to the point of exhaustion. I look for the bright side till I'm gasping for air. I try to see the best even if it means tearing my eyes out.

I'm also an asshole, a loud mouth and a know-it-all.

I am sure of the former because I feel it; the latter is true because I've been told it is.

Can you see the thick mark that bi-sects me from tip to toe making me an imperfect mess that doesn't always make sense? Is it obvious? Tell me. And tell me before you want to punch me in the face with it. Tell me before you're so angry it's the beginning, middle and end of the whole conversation. Tell me when I still have time to try and fix it.

Or don't. Honestly. My cup runneth over with the tired, overwhelmed, nauseating gurglings these types of News Reports give me. Let's all agree right now that if you have bad feelings for me, you need to keep them to yourself. You've had your chance.

And to the point, if you have ever felt the need to and have acted on the impulse to bombard me with my horrible self and feed me a nice, steamy plate of shit, I want you to know that it tastes terrible. I also want you to know that if you didn't turn that magnifying glass on yourself and check out your own blackheads, zits and imperfections, that you can go fuck yourself.

Broken hearts lead to loneliness leads to loathing leads to reflection leads to the possibility of (maybe) love. For me, that special and stunning delivery of love comes in the perfect size for my family. My hot husband, my kids. My one and only's.

The upside of heartbreak? It puts me in the blocks when I need to sprint to the side of my beloveds when they've been struck down and pounded in the chest. But as much as it gives an outline of empathy, my pain is a tipped over kiddy pool in the face of a Tsunami when one of my kids is hurting.

My hopefulness loses air, my bright side is a total eclipse and I can't see anything but rage and red and wonder if Amazon Prime can get a flame-thrower to me in 24 hours.

And it's always the littlest elf whose broken heart breaks mine hardest. She needs more care than the rest of us. She is the synchronized swimmer whose legs never stop keeping her perfect torso from showing any signs of weakness or hurt. When she fell apart last night I wanted to kill people. She slept next to me like a ghost, tiny and curled and so still.

I cried on the way to work. I cried all day. I figured out a plan to help her get through the mess of pain and stress. I screamed in the car on my way home and by the time her bus dropped her off I felt ready-ish to guide her back to a safe, unbroken place.

So when she came up the stairs and into the living room I announced: I have a plan! For what? She says... Uhm, well, how are you? Are you ok? Yeah. I'm hungry, too!

Struck! I was smashed in the mouth with her ability to adapt. Her day brought her serenity while mine brought more anguish until I figured out murder wasn't really an option and I needed to get rational.

And she has been bouncing around the damn house ever since.

She's gonna figure it out. She will keep kicking those legs and she'll stay above water.

Tuesday, November 15, 2016

Eight. We have all made it here safe and sound, my love and there are some things I want to tell you:

I want you to know that I don't cry about your diagnosis any more. I want you to know that I cry about regular mom shit now. Shit like how you notice when you are getting bullied. I cry when you're disappointed and when you're happy. I cry for you like you are a regular damn kid! It's incredible!

Of course, you aren't a regular damn kid, though are you? You're magic, aren't you? You can't hide it. You and your Jack-O-Lantern grin, all lit from the inside and glowing like a super moon. You can't hide your magic. It leaks out and spills across the floor, engulfing everyone around you like an oil-slick of love.

Lincoln, listen to me: You came to us and you saved our lives. You leave the room for 5 seconds and your return feels like CHRISTMAS MORNING WHEN I WAS 6. When you laugh, we fill up on it. You are the buffet of life, my sweet son.

The day you were born was a struggle. I had impenetrable oceans to cross those many, many hours. You hurt me. Searing, muscle melting pain that I remember agonizing over on the left side of my pelvis, right where your head and shoulder and elbow were fighting for dominance. Which part of you would we get to see first? And when I realized you couldn't help yourself, that the pain you were giving me was your only way to say HEY MAMA! GET ME OUT OF HERE! I did everything I could to get it done for the two of us.

All the hands were there to pull you out because you couldn't help yourself. We got you here. And almost as a gift of thanks, you are the spectacular human being that reminds us every day that we won. We won, Lincoln! We get to have you!

Eight years old. You dance now. You talk back to me & you give me the silent treatment. You tell a mean knock/knock joke and you think you know how to wash the dishes.

Eight years old and that means I can't write about your hygiene habits anymore. You're big. I don't want you to be embarrassed when you read this, because I think that's gonna happen really soon, too.

Monday, August 22, 2016

I could (theoretically) very easily stick to pics of my kids, self-deprecating anecdotes, love notes to my hot-husband and bragging on my beloveds. But (in reality) I can't and neither should you.

Facebook is many things to many people and one of the things it is to me is a platform where I can address issues of social conscience and be sure to reach at least a few hundred people with my thoughts and ideas and opinions.

I've laid my privilege out there many times but again, for those who may have forgotten: I'm a white, middle-class, heterosexual, married woman living comfortably and without much personal strife in New York.

Why can't I keep my mouth shut about Race, Sex, Gender? Because I'm a white, middle-class, heterosexual, married woman living comfortably and without much personal strife in New York.

A huge part of my privilege (and maybe yours, too) is that I can put myself out there. I can be messy and mouthy and rage-y because I already have access. My voice isn't too much of an affront because I'm already accepted. I can be confrontational because my human condition isn't controversial.

There is a duty. That's why I do it. I choose to see the need to agitate and annoy. To be provocative with the sole purpose to shift just one, just a tad to the side of being "just".

When people get upset and offended when their pulse rates amp up, when they see a little red or maybe their vision gets blurred, when people are faced with something they vehemently disagree with, there is an opportunity there. An opportunity to reach in, grab onto the controversy and shake it up and show all the sides. When I get called a "Liberal", "ignorant", "uninformed", "WRONG" I know I'm illuminating something that's been in the dark for probably a very long time.

I'm messy, scrappy. Totally unpolished. I've made (and will continue to make) a ton of mistakes when handling fragile things like people's strongly held prejudices and throughout my life I've lost friends over my approach. But I've kept the ones I need and I've made new ones along the way.

I could play it safe and be GRATEFUL FOR WHAT I HAVE. I could be quiet AND REALIZE ALL THE PROGRESS ' BEEN MADE. I could sit still and STOP FINDING PROBLEMS WHERE THERE AREN'T ANY.

Thursday, August 18, 2016

What if the next 2 days weren't just blocks on the calendar, strung together just to be gotten through and over with? What if the next few days are... are so much more than you are ready for?

What if they're signaling the denouement of your eldest child's trip through your personally curated universe? What if the sting of the coming days that you have been feeling every detail of like prickled skin is so acutely painful because you are commemorating the fact that your second most trusted companion on planet earth is flying the coop?

Ruby. Oh, Ruby!

I wasn't a great mom in the beginning.(This is a hotly and emotionally debated pov around here. Hot husband wants me to feel good, be good, have good all the time and that is why I will continue to keep him around. However, this is my story, and my feels are my feels on this one.)

Well, I was fucking killer as the mom of an infant. I'll right hand that to anyone's god. But the years that stick in the head, the guts, the marrow? The years I was mean and mad and not good? Those are the years that make my innards churn. So busy figuring out motherhood, adulthood. Trying not to lose ground. Struggling to be who I was maybe supposed to be at some point... It hurts to type it. I yelled a lot and shut her out. Wouldn't let her help, got mad at her when I did let her...

And because of the mothering she got, she matured seemingly overnight. She was the avocado on the counter that's hard as a rock for days and days and days until it's suddenly to soft to eat. As a consequence she's always done things before I was ready to hear them, to own them.

When she was 16 months she weaned herself. Boobie all gone! No! Not it's not! It's right here!! It's still right here!

When she was almost 2 she told me that she was a good girl and that I was upset because of myself.

When she was 3 she would drop notes down from the second story of the house to tell me where my areas of improvement could be found.

When she was 4 she wanted to and went to real-school-not-play-school-mama.

When she was 5 she had been in school for a year and developed existential depression and she said more times than I can remember that she was "the most differentest person in the whole world".

When she was 6 she was put in the second grade and chastised for not believing in God. Told she'd go to hell. She said to them that she wasn't sure and wasn't it ok to not be sure?

When she was 8 no one showed up for her birthday party.

When she was 9 she was punched on the school bus.

When she was 10 I homeschooled her and I tried to reconnect with her and erase some of the shit stains.

You get the picture? It wasn't serendipitous. It was messy. It wasn't always magical.

Everything I ever said about everything she ever said or did or wrote or made was interspersed with anxiety and worry and fear.

We didn't openly and passionately fall in love until she was 13. And when it's at 13, it's too late to not have scars. It's too late to be without pain. But it has been GLORIOUS. Blood and entrails and all. Her humor is wicked. Her taste in music fascinates me. She tells me stuff. She lets me in.

Mom of infant. Mom of teenager. Those are my gold medal rounds with Ruby.

When she was still just 15 years old she was accepted to university because she is an extraordinarily gifted artist

And now, at barely 16 it's time to say goodbye.

Stop it. I'm not being dramatic. I know her.

She loves me and I can't take a breath without at least one beat of my pulse in her exact direction.

I love her and she hangs on everything I say like so many vines. And now, wielding a machete, razor sharp and smarter than I'll ever be, she's slashing them.

This is a broken heart I can't comprehend.

Luckily for me, I am a wholly inappropriate cryer and am therefore unlikely to lose my shit in her dorm room. The ride home? The day after? Help me, my friends because I'm going to be a disaster.

Wednesday, June 15, 2016

Do you remember the Yankee game when (for once) I wasn't drowning in beer? You asked us if we wanted to go to a bar after and I said "no" and that grin, that Mikey Grin spread across your mug and you go: I KNEW IT! YOU'RE PREGNANT! It was so much fun to share that moment with you and your blustering exuberance some 17 years ago.

Do you remember the email you sent Chris after we got Lincoln's diagnosis? Where you talked to him, to me, about our "new normal"? Well, I still see those words on the screen and I think about how peaceful and welcoming you were from the start. No judgment from Mikey. No fear. Love.

Do you remember how many times I lost the party? I never took home that fucking trophy.

Do you remember how much I loved to cook something new for you? The complete and utter joy on your face when I'd unveil a dish! I would jones for pool parties just so I could make you food and you could swoon over it! You'd rub your hands together right under your chin in anticipation of whatever was under the foil covering the still hot dish, that same huge grin. (I still have the Country Meatloaf recipe you emailed to me 6 years ago. Haven't made it yet. Sorry)

Do you remember the last minute Christmas Eve dinner at our house when your mom and her husband came? It is legend around here! It's never been topped and you know I've tried. Of course the food and the wine... but the mood! The laughing! And of course, the love.

Do you remember how you'd tilt your head and smile when you heard something you really liked? Like when we told you "Penelope"'s name?

Do you remember always being the one with the biggest laugh? The longest hug?

I do. I remember. I remember all of it and more.

What in the world is going to happen without you in the world?

We spent hours last night looking through pictures trying to find ones with you in them... truth is, I was looking for the ONE PICTURE I will always have in my mind: You, with tiny, baby Ruby on your lap pretending to feed her strawberry short-cake. The devilish look on your face! You held that fork precariously close to her sweet baby lips and I swear to god you probably gave her some! God, I hope you gave her some...

Oh, Mikey. This is simply the worst. Good-bye, big man. I love you so.

Monday, February 29, 2016

Lincoln is going through some stuff. Some stuff that's unsettling and scary for me and the hot husband. His health, his education, these things are at risk and instead of reaching out to the experts, I am seeking comfort and assistance from human beings.

In some wonderfully rare cases, these attributes exist in the same person and WHOOO BOYY! Is that a double-dipped-waffle-cone-chocolate-ice-cream treat! But, you know, usually it doesn't. Usually that along the way to "expert" the "human" disappears and what's left if pretty much a bummer.

I used to think that I didn't need doctors or teachers to be my friend, to be friendly, that I just needed them to do their job and do it well. I'm re-thinking that now. No, I have with absolute certainty re-thought that.

When I gestated and birthed my sweet guy I was no expert on who he was, who he was meant to be. I simply loved him and learned from him by watching and waiting and inferring and interpreting and listening and by LOVING him, I found out what I was capable of in terms of taking care of him. Easy! I parented who was presented to me!

And to further that point: Teach who is presented to you, Heal who is presented to you. Do not force things, look from all angles, create a new space if need be (if the existing one is too narrow or too broad), turn the pyramid upside-down and open up!

Down the hall, as I type, Link is playing with his dad.

He is laughing so hard with his dad right in this moment! Their voices are careening down the hall, all snorts and giggles punctuated with "I love you!s". The endorphins and feelings of confidence and security that are flowing through his wee, little body are the ultimate medicine, the greatest therapy. We weren't trained for this, but we are the best at it.

Yet, time and time again we must defer to the "experts" for what's "best". We wait for meetings and approvals and appointments. We wait for data and openings. Treatment plans and educational opportunities that are doled out by the experts who don't know or can't see or won't understand the boy their loss of humanity is affecting.

A tad dramatic? No. Not even one fucking dust speck of drama.

So while the clock ticks and time passes, we drown the blond boy of wonder and grace in goodness and humanness. We get him to laugh and smile and hug and kiss and share and joke from the second he wakes from his disastrous, troubled sleep till his glorious, fluffy head needs a pillow under it again. And so on and so on and so on until some expert, somewhere finds themselves under all their expertness and decides to be a human being again.

Sunday, January 17, 2016

I have these two friends. I don't see either one very much these days for various reasons but mostly due to proximity. Because I fucking love them both for many delicious morsels of truth you understand only if you have friends who connected with you like a lightening bolt. Entered you with a line so direct to your hear & soul that you don't question its value for a second. You simply hold in the fire and let the bond seal till forever and ever amen.

GODDAMNIT. WHY?

I don't hear shitty news and think "Let me hold my children tighter!" I don't think "I need to live every single day like it's my last! I hear shitty news and I am all DAMN THIS BULLSHIT TO HELL AND BACK YOU LOUSY MOTHERFUCKERS.

My life is already a soaking sponge with almost zero capacity for even one more drop of the vast and aching reality of someone else's broken pipes. I have privilege, but not that kind. I can't put aside my day to day and shift gears, to alert the captain we must change course and preserve every second of every moment of every minute of every hour and be thankful FOR WHAT I HAVE.

I guess I'm lousy? I can't get out of my own way enough to be more than angry that too many of my too wonderful friends are sick and their lives and their kid's lives... their fucking kids...

I have been thinking a lot about how many mental illnesses like depression, anxiety & mood disorders are most prevalent in the United States than almost anywhere else in the world (France, The Netherlands and New Zealand are close behind). How this supposed land of the free, land of plenty, place to follow your dreams is filled to its gills with people (like me) who are so burdened by their own problems, they can't possibly be asked to assist with any one else's. I've been thinking, wondering, if this is why we also have barely %50 of our population who consider themselves to be healthy emotionally and able to feel empathy towards others? That our personal psychic overload makes it near impossible to connect on a deep, important level with the people around us and get out of own ways?

There's so much I want to do! I want to make food and raise money and awareness of the day to day hell it can be to live with a shit diagnosis. I want to sit with my friends and their compadres and tell them jokes and assess their picc lines and change their dressings. I want to take their kids shopping & skiing and do puzzles with them (I happen to be amazing at this, btw). But I have my own shit, man! I have my own shit...

What is that? Is that selfishness? I don't know...

Some things about me that I do know: I respond really well to direct requests. I love medical questions and I'm pretty smart and I have even smarter friends. I'm funny and I will make you laugh.

And, and, and, and even though I don't (can't? won't?) shove my own personal ice berg in another direction even the tiniest bit to accommodate a change in my worldview, I have love. And patience. And tears. And fierce, fierce protectiveness of what is right and what should be and I will defend you against all comers. I will rage (in my world) for you. For the two of you most especially xoxo

(here are the lyrics I reference in my title. It's a good song. It's hopeful in a fucked up kinda way. By a band called Cage The Elephant)

Shake me down,
Not a lot of people left around,
Who knows now,
Softly laying on the ground, ooooh
Not a lot people left around, ooooh. ooooh

In my life, I have seen,
People walk into the sea,
Just to find memories,
Plagued by constant misery,
Their eyes cast down,
Fixed upon the ground,
Their eyes cast down

I'll keep my eyes fixed on the sun

Shake me down,
Cut my hair on a silver cloud,
Broken sound,
Softly laying on the ground, ooooh
Not a lot people left around, ooooh, ooooh

In my past, bittersweet,
There's no love between the sheets,
Taste the blood, broken dreams,
Lonely times indeed,
With eyes cast down,
Fixed upon the ground,
Eyes cast down

I'll keep my eyes fixed on the sun

Turn back now its time for me to let go,
Way down had to find a place to lay low,
Lampshade turned around into a light post

Walk around the corner,
Never saw it coming still,
I try to make a move,
It almost stopped me from belief,
I don't wanna know the future,
But I'm like rolling thunder,

Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,
Even on a cloudy day,